Wednesday, 23 July 2014

Dreams and reality

Girl Wonder is home, we hope this time for good. She is resilient and strong and brave beyond anything we could have imagined and we are fiercely proud of her. I can't describe the elation, wonderment and good fortune that we feel as we adjust to this new reality.
 
More than that, I’m not sure how to adequately recount the harrowing experience of the last weeks months. How to tell you about the events that rocked us to our very core so soon after we believed we had found respite from the fear and uncertainty.

About the days of watching Girl Wonder deteriorate physically, knowing there was something dreadfully wrong and not being able to do anything about it as the doctors poked and prodded and wondered for a long time without being able to provide answers.

About the eventual diagnosis of cytomegalovirus, another condition, like the ventriculomegaly before it, that has a might-be-nothing-might-be-life-long-devastation prognosis; the initial confusion followed by the stomach-churning fear.

About my rage at the god damned doctor who broke the news to us, saying in the same breath that ‘because she has Down syndrome it doesn’t matter that much’ if the CMV were to cause cognitive delays that could put her in a wheelchair, unable to speak or feed herself, as though her quality of life were an afterthought simply because she carries an extra chromosome.

About all the ‘minor’ symptoms of her CMV sepsis, including a terrible gastroenteritis that had her writhing in pain for days, after which she ended up being put on nil by mouth and losing even more weight; the terrible edema that swelled her little legs and her tiny face until she was unrecognisable as our baby. 

About how my heart broke right in two the day we realised that this awful hospital experience, practically the only life she had ever known, stole her smile, the one that had been so open and ready only weeks before.

About how excruciating and awkward and necessary it is to maintain some semblance of a family life - reading her stories, giving her bathes - as first time parents in the fishbowl that is intensive care, with a gazillion doctors meetings and hourly monitoring and visits from umpteen therapists every day, none of whom seemed able to help her.

About how I wanted to punch in the face the nurse who chirpily and dismissively told us, as we were reeling from yet another random diagnosis and seeking some concrete answers, not to worry, that love was all a child needed to be healthy; because obviously Girl Wonder is loved beyond measure by so many, but clearly that hasn’t spared her. And because my impotent, helpless rage had to go somewhere.

About how H and I looked like zombies, became shadows of our former selves, functioning on little to no sleep for so many weeks on end, no longer looking after ourselves or caring what we ate or wore as long as we could be by her side and present for every crucial meeting with doctors, there to comfort her after every painful test.

About how the little face that had only shortly before been growing pink and chubby became so ashen and drawn, and how helpless it made us feel to watch that process.

About the day when I was so mad with fear and sadness and sleeplessness that I imagined seriously thought about stealing her away from her hospital bed, taking her off all her machines, putting her in the car and just driving, because I just wanted her pain to end and I thought surely we could find a better way, somehow, anywhere.

About how we gushed our thanks, never with adequate passion or gratitude, at the amazing consultant who finally pushed for the right tests, the answers we needed, the treatment that would make her symptoms disappear and send her home to us.

About the ongoing uncertainty we now have to absorb because we don’t know whether her CMV infection is congenital or contracted post-birth, and thus could advance at a later date. She might be fine now but suffer significant brain damage at eight months or fourteen months or four years.

About how terrifying it is to admit that to myself.

About our tired resignation at the many, many hospital appointments that will be necessitated in order to monitor this situation when all we want for her is a normal, happy childhood and for us to be a family.


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I'm not sure how I can tell you about any of those things, because to look at the happy, growing girl - three months old on Friday - playing on the floor next to me as I type this, it all feels so reassuringly unreal.

If what we've experienced until now has been a horrible nightmare, this must surely be a dream. This girl, she truly is a wonder. A dream come true.


20 comments:

  1. I cannot begin to fathom the ordeal the three of you have endured for most of Girl Wonder's life. To have been through so much and come out on the other side smiling and happy--she is indeed resilient. I'm so glad she's back home with you where she belongs.

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  2. Oh friend, I am so sorry for everything your sweet little family has had to endure. I hope your girl gets her smile back soon... with the parents she has I'm sure she will!

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  3. I have been wondering how you all were doing. I'm sorry to hear the answer is really not well at all. So glad your little girl is home. I hope that the hospital stay will remain a nightmare you'll eventually be able to leave behind.

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  4. I cannot imagine the the incredible trials you have been through and the strength that you and Girl Wonder have had to find in yourselves to endure (and come home). I wish I could give you all a big hug. I hope being at home brings some much needed joy and peace back.

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  5. I can hear the fear and anger in your voice, Sadie. And I'm so very sorry that you and your family had to live through this. As I approach the 1 year mark, a lot of the emotions and fears we lived through in NICU have been resurfacing, causing nightmares and moments of panic. And we didn't have half the experience that you did. Please know that I'm thinking of you as you begin to heal. And I'm so happy that Girl Wonder is home. May she grow, thrive and show them all they were very wrong about her.

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  6. Oh my, I can tell your post only conveys a fraction of what your family and sweet baby girl have been through- so happy to hear she is home with you. As the last poster said so eloquently, may she grow and thrive in ways that take everyone's breath away.

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  7. That sweet baby has been through so much already in her life, and I can only imagine the stress of parenting your newborn through that. You, your husband, and Girl Wonder are ALL resilient, and so very strong.
    Reading about that doctor's comment that it wouldn't matter if the CMV caused cognitive delays left me enraged. I cannot believe that thought would cross a doctor's mind, let alone come out of his/her mouth. Horrible.
    I am so happy she is home with you now. Where she belongs. She will soon be smiling and laughing and loving life. :)

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  8. I am so sorry you all -- your daughter most of all -- had to endure all of that. This was heartbreaking to read, and angering about some of the doctors and nurses. I am so sorry. And I am so, so glad your little girl is home with you. <3

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  9. I'm so sorry she's been through so much, and so have you and your husband. I'm so glad she's home now, and you have some answers, and I hope so much that there aren't any setbacks.

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  10. Sadie, this is perhaps the most beautiful thing I have ever read.

    Also, and more importantly, I am so happy Girl Wonder - wonder girl, girl of awe and wonder and joy - is home. I cannot begin to imagine what this was like for you all or for her and I will not try to pretend that I have words to placate to to understand. Just know that I am glad. So glad. And I can't wait to watch your girl grow.

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  11. This has my in a mess of tears . Oh Sadie, I feel your pain and happiness and hope and fear through this post. Thank you so much for writing this. You are one hell of a wonderful mama and Girl Wonder sounds amazing.

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  12. I am so so sorry that your little wonder has had to go thru this. I wish nothing but joy for her here on out!

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  13. I have been thinking of you and sending you love and prayers. I am so sorry this happened to your precious wonder girl, that she had to suffer so much. I hope it will get better, I only wish happiness for her and I pray that more moments of perfection and smiles like that outing at the seaside will come. She is so strong and feisty. We really do wish you all the strength and joy for your family.

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  14. Sadie, I am so sorry that you, H and Girl Wonder are having to go through all this. I know there is nothing I can do to take away the pain of the past or the worry of the future, but know that I am continually holding all of you in my heart.

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  15. How can this be? There are no words. I am just grateful she is home. I'm hoping that it was cathartic to write the blog post now that you are on the other side of your long hospital stay. I pray that your baby girl gets healthier and healthier each day. She is Girl Wonder, but you are a FIERCE mama warrior. Please know I am thinking of you and your family. I am so sorry for all you've been through.

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  16. This post broke my heart, but still, the hope at the end made me hopeful for the way things have turned around now that your Girl Wonder is home. I cannot imagine. I always used to say that, but now, having the smallest sliver of a glimpse of hospital stays that go on too long, I truly can't imagine the kind of strength it takes to endure what your family has endured. I am in awe. You are all in my thoughts, and I truly wish for nothing but smiles from here on out.

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  17. Oh my goodness. I don't even know what to say, she is a wonder to push through so much, as are you and your husband. I can only imagine the crushing emotions this must bring to you. I wish your Girl Wonder good results and soooo much health. May the happy family moments come and stay. Thank you for sharing this update with us.

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  18. So relieved to read that you are home. I feel sick imagining what you have all gone through. Thinking of you all xxx

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  19. Sending you love and healing thoughts. I'm so so sorry for all you have been through, what a nightmare. Really glad to hear you are able to be home as a family now, like it should be!

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  20. I can't even begin to imagine what you have been going through. Even our brief stay in the NICU can't compare. She sounds like such a fighter. Im so glad she is home and I hope she just continues to grow and thrive.

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